Marsha Lecour was just four years old when she contracted hepatitis C. She was born with a heart condition that required open heart surgery.
"During the surgery, a blood transfusion was administered. And the blood transfusion contained what they call 'tainted blood,'" said Lecour, now 65 and living in Toronto.
It wasn't until decades later, when she was in her 30s, that a blood test revealed she had a virus waging war on her liver.
"The doctor said that I would probably require a liver transplant," she said. "I'd never even heard of hepatitis, and never mind a liver transplant."
Hepatitis C is primarily spread through blood-to-blood contact, including unsafe drug injections, improperly sterilized piercing, tattoo or medical equipment, and in cases like Lecour's, contaminated blood. People infected with the virus often don't know they have it. Some don't find out until they're faced with advanced liver disease, including cirrhosis or liver cancer.
Lecour lived with the disease for more than 50 years, trying to minimize the damage to her liver through diet, not drinking alcohol and meditation. Finally, in 2012, her liver specialist at Toronto's University Health Network started her on a "gruelling" medication combination that would cure the disease.
"Some people say it's like chemo in some ways in terms of the side-effects," Lecour said. "I lost some of my hair, I lost weight, I was depressed.... I was really a basket case."
That approved treatment took almost a year, and with almost no energy, Lecour couldn't work at her job as high school teacher.
But in the end, Lecour was cured of hepatitis C and says her life is "great," free of the fatigue that the virus can bring, and hopeful the cirrhosis it caused is improving. Had she not had an "excellent" work benefit plan that covered the high costs of the drugs, she doesn't know what she would have done.
The same issue is faced by many of the 70 million patients infected with hepatitis C worldwide — and governments that fund prescription drugs, said Andrew Hill, an infectious disease and pharmacology expert at the University of Liverpool in the U.K.
"People are not getting the treatments they need," Hill said. "Governments are saying, 'This is too expensive,' and they're not treating everybody."
In a presentation to the World Hepatitis Summit in Sao Paulo on Thursday, Hill said 90 per cent of hepatitis C patients can now be cured in 12 weeks, at a cost of about $50 US per patient. In addition, the side-effects are minimal, so most patients wouldn't have to endure what Lecour did.
That cure is a combination of antiretroviral drugs called Sofosbuvir and Daclatasvir. According to Hill's research, the price charged by pharmaceutical manufacturers in Canada for 12-week course of treatment is about $68,000 US. In the U.S., the price has skyrocketed to almost $143,000, his research says.
CBC News made calls to Gilead Sciences, manufacturer of Sofosbuvir, and to Bristol Myers Squibb, manufacturer of Daclatasvir, to inquire about their pricing, but they were not returned as of Friday morning.
The enormous difference between what the drugs cost to make and the profits garnered by pharmaceutical companies not only makes the cure for hepatitis C too expensive for patients — it could also discourage government health agencies from conducting widespread screening for the virus, Hill said.
"There are some governments that are too worried about producing a massive bill, that if they tested large numbers of people, they then have to spend tens of thousands [of] dollars on curing each one of those people. And they just don't have that kind of money."
Many countries — including Canada — have committed to a global goal of eliminating hepatitis C by 2030. But new data released at the summit in Brazil shows that only nine countries are on track to meet that objective — and Canada is not among them.
Some affected populations lack 'political voice'
Dr. Jordan Feld, a hepatologist at the Toronto Centre for Liver Disease at the University Health Network and the specialist who treated Lecour, said hepatitis C is "a huge public health problem right here in Canada" and it's "disappointing" to hear that the virus may not be eliminated in the next 13 years — a goal he believes is achievable.
"We now have the tools. We can diagnose this simply, we have treatment that works in almost everybody," he said. "We could eliminate hepatitis C from Canada."
Although the price of the drugs to cure hepatitis C are too high, Feld said, it has "come down dramatically" in Canada from what they were.
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For Feld, the larger barrier to curing the estimated 250,000 people infected with the virus in this country is the absence of a "targeted, well-structured national plan" to actually reach those patients.
"Unfortunately, hepatitis C is highly overrepresented in marginalized populations and some of these people just don't have as strong a political voice," Feld said.
"To be perfectly honest, if this was an infection that affected an upper middle class, wealthy population, I don't think we would be having this discussion about not addressing hepatitis C," he said.
But no matter what their background, Feld advocates broadening screening in Canada to everyone born between 1945 and 1975 — a practice recommended by the Canadian Liver Foundation but rejected by the Canadian Task Force on Preventive Health Care.
Feld argues that a variety of factors, including blood transfusions that were unsafe, past drug experimentation and medical practices that involved contamination years ago, can all put that age group at risk for hepatitis C.